Carries Chiari Connection

I know that it's been a very long time since I last wrote a diary entry.  Believe me, it's been mostly for good reasons because I have felt better lately.  I have had some problems along the way but overall, I think I feel better!

I have stayed busy with my job and trying to raise awareness for chiari as well.  This summer I participated in another Health Fair where I was able to set up my table with a lot of good information about Chiari.  This is always a blessing to me because everytime I do this, people say the same thing to me.  They say that they have never heard of Chiari and start to ask me questions! Sometimes I can't talk slow enough because I get excited when I can educate others about our disorder in hopes of helping someone.   It's very true that the education we do as Chiarian Advocates does help! Believe me...I helped a very good friend of mine from back home after not seeing her in over 25 years.  Her mother suffered similiar symptoms as I did and eventually through time and education, we found out that her mother had Chiari too! This was amazing but also a true reference to the great help we do everytime we educate our friends, familys, co-workers, and the general public.  We make a difference even when we don't see the results so soon.

I work with a lot of other people to raise awareness and provide support. http://www.mayfieldclinic.com/PG_supGroups.htm

There are many support groups and individuals who are willing to be available for support and education about Chiari.  This year we have a HUGE amount of people who are participating in the Walk Across America Conquer Chiari Walk!  Last year was a great success but I can see that this year will be even better!  I am excited to see all the people who will come to my Urbana, Ohio Walk this year and I hope that I am able to meet new people who suffer the same as me so that we can see that their are always more "faces" to what we feel and experience.  We are not alone and we need to always stick together to find ways to live better and with more hope! I hope that everyone can find the time to come out to one of the walks in their state and next year I hope that even more states will join in the effort to make a Country wide event that raises awareness about Chiari and provides the education and support that we all once looked for when we first found out that we had Chiari.  http://www.conquerchiari.org/index.htm I will never forget those early days and months when I first found out that I had Chiari 1 Malformation!  The first days and months were very confusing and very hard for me.  I felt very alone and even just 2 years ago, there was not as much information as there is today!  It's amazing how many websites and blogs dedicated to Chiari are out there compared to just 2 years ago!  I can remember that there was one other girl named Devin who had already had a website (DevinsDiary)for Chiari when I began mine.  Also there was only one support group (WACMA) that I knew about when I first began as well.  Now I don't even know the number of support groups there are but I am sure there are a lot! This is so amazing to me!  Plus the proclamations that we all have successfully received for our states! Amazing! We have come so far in such a short amount of time.  Everyone should be very proud of their achievements and hard work they have dedicated to Chiari education and support!

So with all this being said, I will stop for now with my diary entry and leave you with these words:

Everyone CAN make a difference and we can ALL find a better way to live when we focus on the good we can do.  We all have it inside us to be better and when you feel better about yourself and have made good choices in your life, you will see that this makes you feel better physically too.  Don't ever let anyone change your mind when you are sure about what you are doing!  NEVER have doubts in yourself and those that you believe in because this is what LIFE is about...being happy.

I wish to all of you, Happiness.

~Carrie

May....wow...this month is almost over already and I have a feeling the whole summer is going to just zoom by as well.  I have not done so much in the last few months but also on the same note...I have felt pretty good lately.  I almost hate to write it down because I hate to jinx myself but I have to just continute to believe that I will have these good spells the same way I have the bad ones.  I plan to continue to enjoy my "good spell" for as long as I can! 

This month has been very bumpy for one of our members of this site...and I would give up my good spell for her little girl to finally have some peace!  The member I am talking about is Tonia and her little girl is Nakia.  Every since Nakia went into the hospital to have decompression surgery she has yet to be able to live a normal live! Tonia tries to call me when she can but she struggles as well to live anything close to a normal life as well!  First the recovery of the surgery then she had to get a shunt placed in her head and now...now she is STILL in the hospital getting poked, probed, and tested for everything because she keeps a high temperture and a rash.  Yesterday afternoon Tonia called frantic asking me why the surgeons would have to do a spinal tap in order to find out what was wrong...and why they couldn't just use the CFS in her shunt drain!  I felt so sad and helpless for her because I know this is taking a toll on her and her family.  She is losing so much outside of that hospital in her life but yet...she cannot turn her back from Nakia for a second because she feels that Nakia needs her all the time.  Tonia doesn't have many people to help her and she does not ask for anything!  This is when I wish so dearly that I was already a non-profit organization so that I can help people like Tonia and Nakia!  I am not in a situation to do anything other than send boxed gifts to her children.  I try to be available for her to talk but she is about 3 hours north of me and I cannot be there for her.  This is very frustrating because Tonia is such a great mother and really needs the support right now!  I ask that anyone who reads this..PLEASE keep this family in your thoughts!

I don't have much else to say in my online diary this time around about me...I have my thoughts elsewhere.

I hope that with these upcoming walks...that awareness will be taken to an even higher level this year! We have to keep trying!  I am still looking for corporate sponsors and hope that I can find some companies and supporters to help our cause!

Hugs...

This month has only begun but yet there is much to talk about.  I don't want to focus completely on my own life because I've had a chance to learn and know another family inflicted with problems from Chiari.  But before I do talk about my newest member and her daughter I do want to say that much has not changed for me.  I did go to see my neurosurgeon on Thursday and he did offer me more optimistic feedback with plans to help me find out what can make me better.  He did say a few key things that I will share. 

1.  He agreed that my symptoms ARE Chiari related, as far as he is concerned, and is willing to look at my recent MRI results and see what can be happening.

2.  He agrees that looking down everyday in my job is NOT doing me any favors.  He believes that the muscles are hurting and are the cause of some of my headaches.  I do not have a choice is this area because I cannot afford to NOT work right now...who can right???

3.  He wants to help me to achieve my goals with feeling better and will try and help evaluate my situation and come up with a plan.  Right now the plan is to try heat compresses, massages, ibruprophen for inflamation, and neck exercises.  Massage therapy is very expensive so for now...I have to rely on my husband for this.  Lucky him...lol...I am sure this is not the high point of his day...so I will be searching for a good deal on a weekly plan with a massage therapist.  Any ideas???

Well, those are the 3 key things that I took away from my appointment.  I want to try and stay optimistic because I do feel that my neurosurgeon listened to me more this time.  I know my previous visit was less rewarding and I left there with anger and frustration.  He does tend to say something different each time I go there but I have to think this is because he has learned more and is open minded to change.  He is my only hope at this time and I do rely on him for answers.  One thing I remember he told me after I asked him this question:  Why are there so many symptoms that are the same with Chiari patients even though doctors are saying these are not Chiari symptoms...there is a commonality here...right.?????  My surgeon agreed that Chiari is a funny thing...and they are still learning about the disorder and are unsure of why there are so many unusual symptoms and so many.  He admits that there is much more to learn about Chiari 1 Malformation and doctors do not have all the answers yet.

So here we are...searching for more answers and that is why we need to continue to raise the awareness as much as we can.

Okay, so I am excited but also sad to talk about one of our newest members to Carrieschiariconnection.com.  I recently was contacted via Myspace and then by phone by a lady named Tonia who has a daughter that was recently diagnosed with Chiari.  The story about her daughter, Nakia (Na-Ki-a) is one of the most rarest that I myself have heard of recently.  Nakia was diagnosed with having a 2.5 cm herniation! I had to ask Tonia again did she mean cm's??? She insisted that yes, this was what she was saying.  I know I've heard of many people having the large herniations like this but her daughter is only 8 years old and is doing mostly well.  She does have horrible headaches but she is going to school and doing a lot of things that normal little girls do.  It's just amazing to me that she is not more symptomatic and that someone so little could have such a large herniation!

Once Tonia found out about her daughters diagnosis she was on the internet, on the phone, and asking questions to everyone she could to find out about what would be best for her daughter at this time.  I had to be honest with her when we talked on the phone and had to tell her that I could not say for sure that surgery was the best answer.  For myself, I am not sure the surgery changed anything for the better.  I did not want to influence her by anything I had to say especially since I have NO medical background.  I can only speak of my own experience and for me, the surgery was not a success.  I believe that everyone is different and should do the homework and find out as much as possible about the patient's current medical situation and then get many opinions from medical professionals before deciding what to do.  I also believe a patient, or a patients guardian should NOT be pressured into surgery right away before allowing more research to be done.  In this case, Tonia felt it best to listen to her daughters neurosurgeon and to have the surgery right away.  For her, this was the best decison as far as the surgeon is concerned because he says this is the worst case he has seen of compression.  Nakia had her surgery on April 7th and is now doing better but the first day was rough.  She is a brave little girl and I wish her the very best! I can't wait to hear that she is up walking around and back to being a happy little girl again!

 

Wow...what a roller coaster ride of emotions I've been on lately! I think this is the worst yet for my emotional and physical pain since I've been on this journey...except for of course the decompression surgery...that was pretty darn painful!

What I am talking about is that I have been very emotional lately and the pain has only increased in my body.  The doctors still can't ever figure out what is wrong and once again tell me to try physical therapy.  But let me back up first, January was a horrible month because I spent a lot of my days sick with either nausea or headaches and with other symptoms.  I don't remember the beginning of the month really starting out that way but as I look back that is all I see.  Also, January 15th my father was killed in an accident on I-70 in Pennslyvania while driving the box-truck for the Tire company he worked for.  He was hit from behind by a semi-tractor trailor going about 70mph.  Although it is unclear why my father slowed down on the highway it baffles me even more why a semi didn't distance himself enough to leave time to react to my dad's vehicle.  My dad didn't have a chance...he was hit, forced off the highway after flattening out the guardrails then his truck traveled down an embankment and into a tree.  He died within minutes after being extricated out of the truck.  It has been a very emotional rollar coaster with his death as I had not been very active in his life for the last 4-5 years because I was angry with him and unclear of some things that were bothering me.  BUT...I was still calling him and keeping in touch without conflict and trying to keep our line of communication open because I knew deep inside that regardless of how upset I was at him...I love him...and he is my dad.  So, I felt some guilt but found out that there were many others who shared the exact feelings because somehow Dad had changed over the last 4-5 years and had become difficult to deal with sometimes.  Although that may be true for most, it didn't matter when it came time for everyone to come together to show their love and support for dad at the funeral home.  There were so many people there! I was so tired by the end of the first day from just meeting people and seeing so many of my relatives that I had not seen since the last time I made it to one of the reunions.  I was in charge of dad's arrangements and how things would be done (along with the payment of his funeral...a WHOLE other story!) so I tried hard to maintain myself during the entire day of the viewing but the next day, at the funeral service...there was no way possible for me to contain or maintain...or to do anything except CRY! Thank goodness I had my brother (My real brother..yep...you guessed it...another story there too) to help me through this and to not make things any more complicated than it was as some others seemed to want to do. Together, with my big brothers arms wrapped around me and me with my face mostly buried into his chest, we cried.  He, being the big brother and also the one who usually can stop the emotions from taking over more than I, took the time to keep saying things to me like "It's okay Carrie...I know...I know" and "We're going to be okay...and I love you".  He was my hero that day and as we walked together up to the coffin for the very last time my knees felt the weakest yet.  I forgot to mention that someone had handed me a 5X7 photo of me and my brother when we were only babies...me being less than one and he being 18 months older but he then, just like at the funeral home, had his arms around me as I was crying. The photo had been in my dad's bible for a long time.  I first asked my brother but with his approval, I placed that photo in dads arm in the coffin knowing that we would be with dad forever now.  We were very important to dad...and he never forgot the memories and the love he felt for us regardless of his mistakes, and I know now more than ever that my dad loved us very much!  There was times, yes, that I thought maybe he didn't because of the time that would come between us as well as the distance.  Let me tell you this, all the mistakes and the things forgotten to be said...all that doesn't matter anymore.  It probably should have never mattered but as human beings we let our emotional needs dictate our feelings and therefore our behavior.  It's all done now and I've come out of this with some very positive thoughts that I know overtime will take away any pain that I feel today about my dad.  This brought me and my brother closer than we already were and I believe he and I both learned things about one another that we never took the time to see.  I can't speak for him but I know I've learned more about him and yes there will always be things that an older brother does to irritate the crap out of his little sister but I think the memories and what I've learned will give him a few more credits for making mistakes and being forgiven...but don't tell him that! lol.....we don't want to give him an EXCUSE to be a brat..okay!?

Anyways, so yes my dad passed away on a very cold day on January 15th, 2009 at age 68 and with a ton of people left behind to keep going on and to keep his memories alive.  I will allow myself to forgive myself for thinking the things I did for the last few years of his life and realize that even I make mistakes too.  This may or may not have been a mistake but I have a heck of a lot more memories before that where dad was in our life and we had many good times. I know that I spent over 30 yrs in his life and that he loved me very much.  I will always be his little girl that he called Honey so many times! Yes, this was a common name for a little girl but it's special to me...even if dad called a thousand other little girls that...because I was his first daughter..his first Honey...and always and forever his little girl. I knew lots of things that Dad shared with me just recently that opened my eyes to a lot of questions I had about him and about our relationships in our lives...he answered me and told me "this is the truth honey, even though I know it hurts you and you wanted it to be different" and then he told me, "I love you and that's why it's important that you know the truth".  So I feel deep in my heart that this accident was somehow forseen and that he wanted to make sure that I understood him and that he didn't leave behind any questions that I had always wondered about. He was getting older and I am sure he knew he would not live forever but I think it was important to him that I went on the rest of my life knowing that he loves me and that he told me the truth.  I believe him.

As for the Chiari, it doesn't even feel right to comment much more about that after writing about dad.  Chiari has been a horrible monster for me in the last 6 months (give or take a few months).  To be completely honest, I can't blame it all on Chiari but since the doctor keeps running tests on me for other things and they come back normal I am only left to say that it is the Chiari.  My dad was so concerned about my disorder and tried so hard to learn about it but my dad was horrible with the computer! OMG...it took me about 45 minutes in October to teach him how to go to my website and to save it into his favorites.  This was not the first time that I attempted this and thought for sure that it wouldnt' be the last time either...but it was. Sorry...again I got off track...back to the Chiari...

The last few months I've suffered extreme pain in my arms/shoulder that prevents me from doing many things without screaming out, "Ouch!!!! Owwwww" But I've tried to use it just in case it just needed to be "worked out" but I don't think that is helping anything.  It is very hard to explain this pain because it's different from past pains I've had but I am pretty sure it has to do with muscles.  I asked my husband the other day as he was trying to massage out some very painful spots all through my neck and back if this is normal and does everyone hurt when touched on certain areas of their back and neck....I was being serious.  Of course his answer was "No, Carrie this is not normal!"  I guess I just can't remember NOT hurting so it seems like something that is normal to me.  But in all honesty, I think the pain really only got worse after my brain surgery last January.  I know I had constant pain in my neck and upper back but now it's not only painful when I move or sleep...Now if someone just tries to lightly massage me...it hurts very bad.  That makes me and my husband think that I have something wrong with my muscles or that my brain is sending out a pain signal.  I don't completely understand this myself but I intend on doing some research to find out if it's possible for muscles to be in extreme pain by compression of the hindbrain and for the brain to send out "ghost pain" because it has been damaged.  It's too confusing to explain in complete detail to anyone else...so bare with me...I have to figure out what it all means.  The reason for our thoughts on this is from asking some questions to a few different doctors and also because there is really NO reason for my muscles to be in this much pain.  I am not going around using these muscles and doing things to make them hurt.  Therefore...we can only assume that the brain is sending out a signal to tell the muscles to hurt.  Wow..that does sound crazy, doesn't it???? So, anyways I'd rather get off that part of the subject since I know very little about it but the point is that I am in a lot of pain and it's interferring with my life, my job, my emotions, my family, and my overall feelings about my life.  It's very hard to think that I can't ever figure out why this is happening to me..so therefore I will never find a way to stop it.  It's very hard to accept this as a way of life.  I sometimes try to just ignore it and pretend that I am not sick with this disorder but then the next day I am either in bed the whole day or I am not worth a dime the next day.  Sometimes it's worth it..but not normally.  I just want to be like others who are my age and be able to have a good time without thinking there will be a consequence to it.  There is a lot of good things about me and I did use to enjoy doing many things but anymore I am constantly saying no to almost all invites and trying to just be by myself in my room...where nobody else has to hear my complaints and I don't have to try and explain why I am the way I am.  I know this is unhealthy but what else is left to do???  I am so tired of going to my doctor with complaints...then here comes the test..then the result which is always normal...and once again I feel like I am going crazy and imaging the pain and the symptoms.  Another symptoms that has bothered me is with my ears.  It seems like my hearing goes in and out and gets a "muffled" feeling.  Then I will hear a very high pitch tone that I am pretty use to but lately it just seems to be louder and longer.  I am also ALWAYS tired and feel weak all over my body.  I just want to sit and not move on most occasions.  I am sure some of it could be depression but being aware of that should help me to get out of it, right?? Maybe not.   I don't think this is all caused by depression and I don't think it's really in my head or that I am going crazy.  I am certain that this is all real and that I am not imaging but when doctors can't find what the problem is...it's very easy to trick yourself into believing that your just crazy.

Well, enough of this...my arms are ready to fall off.  I just wanted to share my feelings and I was hesitant about sharing all of this because I really try hard to be positive and to find good in most things.  But...I am only human and I am suffering...physically, emotionally, and it's not getting any better.  I know this will pass....or change but I would like to see some kind of improvement or something to give me some kind of hope.  I really need hope right now.

I will end this diary entry wishing everyone out there to not have to feel the way I have lately...but I know there are so many that do.  I wish for us all to find comfort, strength, and love not only within others but within ourselves.

Continue to raise awareness.....we are getting closer.

One year has past and it has been one full year now since my Chiari decompression surgery.  The day was January 7th and that day was also the first day as a non-smoker! I have been a full year without smoking at all! I thought that would be hard and kicked myself in the butt several times throughout the year for trying to quit smoking at the same time that I was going through recovery from a pretty major surgery! But....I did it! If I can do it, anyone can! I never thought I had the will power or the energy to fight against the urge after smoking for 23 years! So, I guess never say never because I honestly use to say that I could never quit since I had been smoking for so long and it was more than just a habit for me. The weird thing is that when you smoke, you never think about how you smell, look, or how you are looked upon.  I try so hard not to judge or comment too negatively on a smoker but I can honestly say that I feel bad for forcing upon others my stinky cigarette smell and I feel horrible for forcing people to be around me when I am sure I looked horrible, unattractive, and stunk so bad! So again, I try not to comment because I've been there and I had no idea at the time how nasty it was. The weird thing about it is that even now, I still get the urge to smoke even though I know how stinky and nasty the habit is.  It's a hard addiction to quit but it is possible! Lesson learned: You can do something even when it seems impossible when you really put your mind to it and really WANT to change!  Also learned: Don't judge someone especially if you haven't walked in their shoes! Not even if you have because although your not walking in those shoes anymore, you never know when you might slip them back on!

January 7th also is a celebration at how far I've come in one year! Although I am not cured, as we all know the surgery is NOT a cure, I do know I tried all my options available for now.  I am mostly experiencing muscle weakness or damage in my arms/shoulder area, severe Neck pain and lack of mobility at times, back pain, headaches/pressure, ringing in my ears and feeling as if the sounds around me come and go or the volume is going up and down (kinda hard to describe this one), sensitivity to noise, insomnia and restless leg syndrome, very emotional and irritable, and a very noticable increase in nausea. I also am still getting tired easy and have to plan out what I can do in a days time.  I have to sacrifice parts of the day just to be able to do what I have to do in another part of the day.  For example, if I go to work for my normal 8-9 hrs a day I normally cannot do much else afterwards.  I normally go home and rest and get caught up on things that I can do sitting down.  On the weekend, after working all week I mostly take Saturday to just lay around and relax and get myself mentally and physically refreshed.  Then on Sunday, if I feel the energy is there I do the errands and small tasks around the house.  I honestly try hard to take care of both sides of my needs.  I try to get plenty of rest as my body calls out for and in the same aspect I try hard to maintain my routine.  Some weeks are better than others but on average it is as described here.  I really honestly wanted desperately to be able to have a very positive story after my brain surgery.  I hoped for a change that would bring me back to feeling like the "old Carrie" that I've missed for the last couple of years.  I miss the energy I once had, the strength, and the endurance that I felt kept me alive! I figured after I quit smoking that I would start a moderate but consistant exercise routine that would help me build my muscle strength and help my mind as well.  The only problem is that I seem to get sick or ache so bad after working out that I am frustrated and don't really know how far I can go before I hurt. My plans will have to be thought out again because so far they have not worked for me but I do plan on trying something and not giving up.  I feel the exercise can help me in so many ways and it may be the answer to some of my health problems.  I believe that positive energy and positive thinking can go a long way into helping to stay healthy.  At least trying will make me feel that I didn't give up and that I am willing to do what it takes to feel good.

So here's to another year! I hope that this year I can dig a little deeper and pull out more strength and give myself more credit and not give up so easily. I get sad to think that life is so short and that we are the only ones in control of our lives.  We can't always change every single part of what we are and we definately can't make our disorders and illness go away just because we wish it were gone.  We only have this one life and we have to take control and make a decision as to what we want out of it! It's very easy to get depressed and caught up in the negativity and fall into a slump. So we can only teach ourselves what to do when we feel we are falling down that hole! One thing that I have reminded myself is that there is always someone worse off than me and there is always someone out there that loves me and is willing to hold my hand when I need it or give me a hug when I feel sad. I also remember that there is always someone out there that needs me as much as I might need them during those times.  I know that life isn't suppose to be easy and that no matter how much pain I feel I cannot allow myself to get to down and lose my will to keep fighting.   I am working hard on that part and I know I will have my days but all I can ask myself is to make an honest effort to do everything I can to change the situation.  Don't give up on me.  I won't give up either!

Good luck to everyone....and I hope you have enjoyed reading my diary entries over the last year and that it has helped you in one way or another.  I know that it has helped me to know that you are out there reading and cheering me on.  I am grateful that we are all here for one another and all trying to make the best of the crappy deal we got served!

Cheers~! 

It's hard to believe that it's been almost 9 months since I had brain surgery.  I look back and I remember thinking that everything was going to be better now because I had the surgery but I can't say that because I feel like I'm getting worse.  It's almost exactly about the time that I started working mandatory overtime at work but keep in mind that started almost immediately after I came back from medical and having my surgery.  I believe that my life just took off to fast and I never had enough time to get better...completely better first. I wanted so bad to be better and to not be like the many people I heard telling the story of how the surgery didn't help them...I wanted to be better because I NEEDED to be better! I didn't think I could go on anymore with my symptoms and my pain.  I didn't think I could keep pushing myself when nobody understood me.  I just wanted to have a normal life and to think about other stuff instead of always thinking about Chiari! For a short time I thought I could stop thinking about it...stop worrying about being sick but it didn't last long. Here I am, almost 9 months later and my neck and shoulders and even my arms are in worse shape than before the surgery and there isn't any doctors out there who can tell me why!  I am still tired a lot and I have other symptoms off and on but the worse by far is the pain in my shoulders and neck! I am still avoiding doing a lot of things because of the pain and I am still trying hard to find answers to why???

I continue to try to raise awareness and continue to teach people about Chiari and my hope is that someone takes us all seriously and believes in our needs and helps us find a way to live a normal life! It would be nice to just know that other people understand us.  It's so very difficult to explain to someone how I feel when I know there is no way possible they can relate or understand.

Well...the walk was this past Saturday and I feel that it was a great success and that people were happy to be there sharing the same purpose to raise awareness.  I felt honored to be one of the State of Ohio organizers for Conquer Chiari for the Walk Across America (pictures of the event are in the photo gallery) and I met some people with Chiari who I know for sure do understand my pain.  Still, they were there to push forward and to do their part in supporting the Chiari community and passing on the info about Chiari. I have a lot of respect for those who came with Chiari and those who came for somebody who has Chiari because some drove all the way from Cleveland and Kentucky! I was very happy to meet everyone and to finally give hugs to people I've talked to online for a while now! But..I am ready for a break again and take some time to get caught up on things I've neglected for the last couple of months.  I need to try and catch up on sleep too!

Well...I feel like I could spill my heart out here and talk more about how nobody understands....but it doesn't really do me any good.  I know some people do understand...they really do but those are the ones who either live with someone who has Chiari or a disorder similiar or has it themselves.  It's hard...really hard to live with...but I am taking it one day at a time. Maybe with all this money we all raised with the walks we can find a cure and have a better life soon!

Well, I am very tired and it's getting late but I wanted to make sure I wrote an entry because it's been a while since I've wrote something.  Stay strong...Stay true....and always stay YOU.

NOTE:

I added a calendar to my website and I wanted to let people know that if you have an event, or a special date coming up...I would be happy to put it on the calendar.  This can also include surgery dates...or anything else that pertains to Chiari!  Let me know ASAP...

Have a great day..

Wow...it's really been 5 months since I had brain surgery!  It still feels so recent to me and I feel that I am still in recovery and from what I hear, it's normal.  Normal...something I don't hear very often when it involves me.  I do feel that my life is finally taking on some form of normalcy.  I had heard so many horror stories from people after their decompression surgery and I feared that I would end up with a sad story to tell as well but instead I feel that I have a positive story to tell.  I know that my life is forever changed and I mostly have accepted that.  I understand and accept that there is no cure at this time for Chiari.  I also know that I can have an array of symptoms arise at anytime.  I've accepted a lot of this and yet I still struggle with the facts from time to time.  Depression comes and goes and I find myself looking for a way to enjoy myself to the best of my ability and normally I succeed.  I find myself being the funny person or the silly person during a party or event, I find myself trying to do anything I can just to laugh. There was a man at work who made my day last week and he probably doesn't even know it.  I was delivering some parts to his department and he stopped me to tell me that everytime he see's me that I am always cheerful and smiling.  I was kind of surprised because I was actually having a difficult day that day and was really trying hard to smile and maintain a positive outlook but just the fact that he noticed my cheerfulness it was enough to keep me smiling the rest of the day!  It meant that I was succeeding at being all I can be instead of looking miserable and in pain.  This was very rewarding to me...it may be hard for the average person to understand just how much it meant to me.  I am doing everything I can to beat all sides of this disorder and for the most part I am proud of myself for fighting and winning for so long.  I realize that there may be a day that I can no longer enjoy my life the way I do now.  I know there is a chance that I can lose some of my motor skills and even possibly become paralyzed.  I am already having some serious trouble with my shoulders and the surgeon cannot find anything that would indicate why I am unable to move it well and why it's difficult to straighten my left arm like I've always been able to do.  I don't dwell on the pain and the things I cannot do; instead I just try to have as much fun as I can. So, I am completely aware of possibilities and also of my accomplishments and I am learning how to move on and not let it control me.  I know I will have my down days but I do think there are fewer and further between. (So pardon me if I seem a little "out there" or if I am laughing too loud...I am just trying to enjoy life..join in if you like)

 If someone was to ask me how I do it I would have to say that surrounding myself with real friends, family, and people who are loving and supportive is a major factor.  I feel so loved and appreciated by so many people in the Chiari community and have found some great "family" along the way.  I don't think that I would give that up to have been born without a birth defect.  I can accept what I have and that I am different but I don't want to think about what my life would have been like without the awesome people who have touched my life in the last year!  I am very fortunate to have found the friendship and feel the compassion that I have felt in the last year. 

So, it has been 5 months and I have to say that I am feeling better.  I know that I wasn't cured with the brain surgery but I feel that it made me better somehow.  It doesn't matter if it was a physical change or the fact that I finally decided to live my life rather than give into my disorder...one way or another the surgery made a huge difference for the better in my life. It was a turning point for me.  I believe that positive thinking can go a long way!  

(by the way, it was very scary to know I was going to have my skull cut open, my dura sliced, and have vertabrae along with skull removed!! But I survived without too much trouble....it's more scarier to think about than to actually have it done...but I won't lie...it was very painful for a while!) 

I am very excited when I  announced that I will be the organizer for Ohio, along with Nicole Hutnik and Merideth Rought,  for the Conquer Chiari Walk Across America taking place on September 20th.  (Readers: Please visit my event page to read more about it.  I will be posting updates as they occur).  I know that I just had brain surgery for my Chiari on January 7th and that I am still in recovery but that is why this is so important to me.  The walk will raise funds to continue to try to find a cure for Chiari!  Surgery is NOT a cure but instead is a hope that the surgery can lesson some of the pain and decrease some of the symptoms.  Hopefully, it does not create new symptoms or pain, but sometimes for some individuals; it does.  As a Chiarian, it is so important that I do everything I can to raise research dollars to fight against Chiari!  I just hope that I continue to dig deep to have the strength and courage to face what lies ahead.  I feel very confident and very hopeful and I truly believe that I am on the road to a good recovery.  I have accepted that I am not cured but I have not accepted that there can never be a cure!  One day...somehow...we will find a cure! We will understand and be able to teach others more about our disorder. 

I know this is a lot to tackle; being promoted to a new position at work, my hours changing to 10 hours a day, and our shifts changing several times before they decided to stick with one, and trying to raise a family, along with life in general...... but the importance of this walk and the benefits will be the reward!  I have a lot of wonderful friends and Chiari family members out there who will help make this successful! 

Here I go......again....lol

I was showing a coworker my site and relized that I had not had a diary entry for a long time.  I try to post one a month at the very least and since today is the last day of the month....I'm still on time...lol.

My surgery was January 7th so it has now been nearly 4 months since my surgery.  I have a hard time answering the questions that I hear consistantly; "Did the surgery cure you?"  I tried very hard to educate as many people as possible that the brain surgery was not a cure and even supplied a website link to better explain why I had to have the surgery.  Regardless, the surgery, has changed my condition to some extent.  Im not sure if it was because I had already decided before the surgery that I was going to stop letting the Chiari ruin my life or if the surgery actually helped.  Either way, I do feel different and I feel less shattered.  I do continue to have heart palpitations, pain in several places, breathing problems, body temperture problems (hot/cold), and a few other things.  I somehow feel that the symptoms are more managable and I try very hard to take only the minimum of my pain medication.  I have recently had a really bad bout of RLS (restless leg syndrome) and have had to include one more pill to my daily dosage.  If anyone has ever had to endure RLS they understand that it is horrible and at times you want to just cut off your legs and in my case;  both legs and arms.  Then again, I have recently been under a lot of stress; some good stress and some bad stress.  After just returning back to work in March from medical leave from my surgery, my employer bumped us up to 10 hour days and right now it is 5 days a week.  Eventually, we will get Fridays off from time to time but right now it is our mandatory overtime day.  Our schedule is 4 ten hour days; Monday through Thursday leaving Friday for overtime days.  I also started a new position that I was promoted to this past Monday.  To top it off, they changed the shift times but mine was not really affected other than the fact that I have to stay late rather than come in earlier to do my 10 hours.  By the time I get home I am too tired to do anything and I am still trying to make sure that I don't overdo it from my brain surgery.  I love my new position at work and I feel that this new job will keep my mind off of my pain and my symptoms which is great!  So there isn't much else to report for now because basically, I'm just trying to get through each day one step at a time and keep myself as healthy as I can.  I do believe that I will be organizing a Chiari walk in September soon....stay tuned for more on that.  I will be looking for sponsors and donations if I decide to for sure do the walk.  This walk will be in Ohio....and I hope everyone comes to help support Chiari Awareness!

Please continue to use my forums and blog....and even the guestbook.  I will try to answer every email that I receive so don't give up on me if you don't hear from me right away.  My email is carriebear31@msn.com .

Don't forget to purchase the books by Rick Labuda and the one from Dr. Ray D'Alonzo.  For Rick's book you can visit Conquer Chiari (found on my navigation section to the left of the page) and Rays book is called, "Contents Under Pressure"....email me if you have questions.  If you want to learn more about Chiari these two books are a great place to start and to share with family members, friends, co-workers, or anyone else in your life. 

As always....gentle hugs to my Chiari friends!

xxxxooo

I survived my first week back to work although it was tough!  I ended up coming home Tuesday and falling asleep by 6:00pm and then couldn't even wake up on time the next day.  I ended up going in 2 hours late but once I finished the entire week, I considered myself "doing a pretty good job".  I survived the week and lived to talk about it...hahaa.  I guess the fact that we have  blizzard conditions outside our house right now is a good thing because it will force me to stay in and relax.  I need to save my energy to make it through another week.  I think after a few weeks I will be back to normal.  It's just really tough to go back to a routine after not having one for 8 weeks.  One of my main problems this last week was mostly the fact that I had trouble staying focused.  I didn't get too tired but I did have a lot of pain by Friday afternoon in my neck.  I was glad to go home by the time 2:30 rolled around especially since we were under a Winter Storm Warning.  I left an hour early to make sure I wouldn't get stuck driving with everyone else and therefore I would be safer.  I worry more about the other driver rather than my driving.  I made it home safe and I am going to enjoy staying in for the weekend and refueling for next week!!

~Wishing warmth and comfort to everyone.....

Carrie

Well it's leap day and It only makes sense to write an entry on this day.  I am "leaping" back into my life again and today is my last day off before I return back to work and back to a normal life.  It's been very interesting, to say the least, during my recovery time; I've had plenty of time to relax and reflect on my life.  Although I have been asked many times if I am cured, I need to say it again, there is NO cure for Chiari.  The surgery was not a cure but instead is a "hope" for a better quality of life.  (Refer to my previous entry and website reference to "Full Recovery Impossible").  It is best explained in that one paragraph and I cannot explain it any better.  Even though, I am very pleased with my surgery, the outcome, and my recovery process.  I feel that it has changed my quality of life and I am very hopeful that some of my symptoms will be alleviated, if not eliminated.  I will not know for sure how much it has changed me until I am back to my normal life and in full swing again.  I am very anxious and excited about returning to my normal life but I would be lying if I said I wasn't nervous.  I have still had trouble with getting back on a "working schedule" because I have not had to.  My husband also started a 2nd shift job during my recovery time and it will be a challenge for us to maintain a good sleeping habit during the next few months as we adjust to our new schedules.  Either way, I am very hopeful and I am up for the challenge!  I would have to say that my surgery was a success in the fact that it has changed me for the better and I would hope (dont know for sure without a Cine study) that my CSF flow is running normal again or possibly for the first time in my life.  I do not notice the head pressures as often and I can't wait for the chance to find out during an event where I get to cheer my kids on; like sports or whatever!  I've always had to hold back screaming and rooting because it would cause me to have to sit down and hold my head tightly so that it didn't explode.  I haven't tested it yet because I refuse to do anything that can jeoperdize my recovery.  I've followed the doctors orders almost to a perfect "T".  I believe if someone is to recover well and see the true effects then they need to do everything possible to make sure they do their part by following doctors orders! 

I am still doing very well with my "No more smoking!". Its been just about 8 weeks for me! (Can I get a Woo Hoo??) and I am getting a treadmill soon so that I can start out slowly to getting my body as fit as possible.  My doctor told me that I can exercise as long as I avoid activities that are harmful to my recovery; such as excessive neck bends, straining, lifting heavy, or riding a bike as I can injure my head if I was to fall.  I am allowed to ride a stationary bike (if I had one), walk and jog on a treadmill, WALK, and mild cardio exercise.  Mainly, I need to listen to my body and take things slow as I work up to a good exercise routine.  That is the most important thing I have learned; listen to my body.  Your body knows when it's too much or not enough...it knows when we lack vitamins and nutrients, and it knows when it lacks sleep...We just need to listen.

I will continue to post updates as time goes by and I am also working with some other Ohio chiarians with forming a group of Ohioians who have Chiari or have a child with Chiari to plan get togethers and discuss ways to improve our Awareness.  I am still on a Awareness Campaign although I have took a break to recover.  I am grateful to all of you who have been so supportive of me and all the kind words I have received.  I've learned that I am touching more lives than I thought and actually making a difference...this makes me feel so wonderful and accomplished as a human being but bottom line is that YOU all have made a major difference to me and my life has been changed forever due to the great love, support, understanding, and overall friendship I have received.  I have built so many wonderful friendships and I have a wonderful family of Chiarians!!!  I am truly blessed!!!! I am forever grateful to you all (and you know who you are) for making me feel a part of a family.  Having a family is one of the most important gifts in my life....My immediate family and my chiarian family and my Friends who consider me family!  How blessed am I? VERY~!!

Hoping you all are having a pain free day and thank you for visiting my site and keeping me in your life!

~Carrie 

"Raising Awareness one step at a time..."

My recovery is going very well.  I feel very hopeful that I will be as normal as I can in a few months.  I know that it takes time and I am willing to wait it out!  The only thing that has troubled me is the amount of people who ask me if I am cured now.  People assume that the surgery was the "fix" or "cure".  Chiari has NO CURE at this time and that is why we, the Chiari community, are trying so hard to raise awareness and some are even raising funds for research.

This website: http://ww2.arthritis.org/resources/arthritistoday/2000_archives/2000_09_10_chiari.asp has a section called: Full Recovery Impossible that explains to people what the Chiari surgery is for and this section is a good tool when explaining to others the outcome of your surgery.  I hope it helps like it has me.  I hope people read it and understand that Chiari has no cure.  Chiari is a disorder that we have to learn to live with and the sugery helps correct the CSF flow and should prevent further damage from blocked CSF.  You would have to talk to your surgeon to see how the surgery would benefit your situation to know for sure if the surgery is best for you.  I don't believe that everyone should have the surgery unless you have certain characteristics.  One thing for sure is if you have blocked CSF I would think you need to correct that!  A CINE study would find out if your CSF is blocked or not.

I actually felt great this last weekend and ventured to the mall for some walking.  My surgeon encouraged me to walk as much as I can tolerate.  I cant walk outdoors because of the cold so I chose the mall.  I did this 3 days in a row and on Monday I felt so great that I decided to do some light housework; like dusting, organizing and such.  This was probably a no-no.  I have hurt now for two days in my neck and head! The doctors orders said NO housework!  I just thought I was doing so well that I could but I have learned that it is most important to listen to the doctor because he knows best.  I am now taking it easy until I go back for my follow up with him in a week.  I am only worried about my transition back to work in February.  I think am scheduled back to work around the 11th of February and I don't know how I am suppose to go from doing barely anything to doing my job which is hard on my neck since I have to look down a lot.  I also would be having to lift and do other things that I don't know how I'm suppose to do after not doing those things in a 5 week period.  Hopefully my doc will have all the answers.

This is week 4 for me (be 4 full weeks on sunday), and I am feeling very hopeful and I am excited to see which symptoms will be gone or altered over the next year or two.  I hope the surgery has done something for me other than corrected the CSF(which is great alone).  I hope it rids the pain and other symptoms and gives me a better quality of life.  Thats all a Chiarian can do is hope...and keep hoping and continue to stick together and offer support.

I would love to hear some great positive stories about Chiari Surgery outcomes from others.  Please take time to enter your story in the blog section of my website and if you would rather just send me a short story in an email, I will post it on the site.... send to carriebear31@msn.com  and in the subject line enter "my chiari surgery story".  I think it would be wonderful for other Chiarians to hear the positive side of Chiari because I've noticed that some of the support groups online people seem to dwell on the negative...which I know they do this for venting reasons and I completely understand but I think it's great to shed some positive light on the surgery subject!  Please send me your story soon.

I am so proud and so happy that I have had such great support from other Chiarians online.  I want to thank all of you for making my recovery easier by keeping in touch with me and sending me encouragement.  I believe it has helped me so much with my recovery....Thank you all so very much. I would like to encourage you to tell as many Chiarians as you can about this site and keep the network of support going.  We can share our stories and provide encouragement together for others who are scared, confused, or just need a friend who completely understands!  We have to stick together and try hard to stay positive and provide a network for eachother.  A special thank you to all of you who have done so for me and others in the past!  The amount of members to the website are growing....which means more support...more stories...more inspiration....So please use the tools on this website such as the blog and the forums or even the guest book to share stories and connect with others.  Please tell me if there is anything I can add to make the site more useful for connecting Chairians....I am looking into some ideas.

P.S. I still haven't smoked ...over 3 weeks now! Yay me!

 

 

My surgery was completed on the 7th and I was sent home around 4 the next day.  I have to say that even though I was so nervous about being sent home so soon, it all worked out great.  The nurses at Good Samaritan would not send me home if I was hurting too severly.  I was afraid the 2 hour trip home was going to be horrible but they made sure I had good meds in me and I can barely even remember the trip home.  We took a break after 1 hour.  The first 5 days at home were the hardest.  I had constant pain in my head, like pressure, and my neck muscles hurt very bad.  I also noticed after the surgery that the ringing in my ear I had noticed off and on through the years was now there full time.  I am still puzzled by this.  I can hear it all the time.  First, I heard like a gurgling sound in my left ear, then I thought I felt water in it, after that....I could hear the ringing very loud.  I think Im starting to get use to it but I still don't like it.  But if thats the worse that happens than I consider myself so very lucky!  I do feel lucky anyways because I don't feel that my recovery has been so hard.  I know I would never have thought that in the first week because I swore I'd rather have another birth than do this again! lol....but now..today...I feel that the worst is over and it didn't last long.  I am doing so great...I still have pain and I can't do what I want to do..doctors orders! But I am anxious to find out which of my symptoms are gone.  I do notice that I can hear better at times...but then sometimes Im not sure.  I just think that I have something wrong behind my ear or something.  Its too early to know if it rid my heart problems yet or if I will get numbness in my fingers and arms.  I think once I recover completely then it will be obvious what has changed for me.  Im excited to find out.  I am so hopeful that the surgery has made my Chiari more manageable and will give me back my quality of life.

My incision, from what others have said, isn't as bad as what it could have been.  People were shocked at how nice of a job my surgeon did.  Some people even say that I don't look like a zipperhead..but hey...I earned the right to be called zipperhead now...lol . Wow...never thought I'd want to be called that but after what I've been through and the pain I had to go through....I think its only right to group myself with all the zipperheads out there!  I do know what it feels like now and I completely understand the pain!  I am hoping to be able to write soon that I have less symptoms and that I am feeling brand new soon......keep checking back because I will try to put a new entry up in a week or 2.   If anyone wants the name and hospital of where I had my surgery just contact me.  I would highly recommend my surgeon in a heart beat! 

The only bad thing about the hospital stay was my experience with ONE nurse.  She said she has been a nurse for 7 yrs but I think the hospital was understaffed that night.  My IV machine had beeped for about 40 minutes and it said there was air in my line.  We could hear my nurse talking with another patient in the next room and we could tell she was struggling to convince him of something but she spent way to much time with him when he was not in dire need as I was. It was time for more medicine to be put in my IV.  By the time she got into my room she was unable to put medicine in my IV.  IT was time for my muscle relaxer at that point...but also the Moraphine was due very soon too! She tried to administer the meds but couldnt because my IV line got plugged up..So she tried to flush it out but couldn't.  Then she tried heprine(spelling?) but it didn't work. So she told me she had to put a new IV in my arm.  I just wanted the pain to stop!!!!!   I was not crying yet but she tried twice to put a needle in me but both veins blew up.  I had no idea what she meant...I dont think any of us in the room knew and it made me scared.  Then she called in another nurse to try again and she couldn't even get the needle in! So then she went and got someone else who tried twice and failed!  (My original IV was in my left hand, the first nurse tried in my right hand, second nurse tried my right arm, and the third nurse tried my left arm twice) So then they called in the head nurse from ER, who is head of all the nurses and she was able to start the IV in my right arm in the bend! Finally! and she gave me half the dose of my moraphine because my blood pressure was low.  They had to use boards to keep my arm straight because of the place the IV was now.  It was 3  hours before they got an IV in me but then the machine wouldn't work right!  So they flushed that IV and the IV was ok. She couldnt give me anymore of my moraphine because they had to do a bowlus flush....which is a large fast saline flush...250ml.  she messes with the machine and by some miracle it finally started working.  So afterwards she did the bowlus flush and was able to finish giving me my moraphine dose.  Then....after the 40 min flush she was able to give me the muscle relaxer.  So in the end I went 6 hours without moraphine and over 8 hours without a muscle relaxer.  The nurse was very sorry....she started crying so much and bent down and told me that this has never happened and she didn't understand why it was now.  Of course I felt sorry for her and I believed she was sincere so I couldn't get angry.  I just wanted to stop the pain.  It was the night of the surgery so I was in horrible amount of pain. But don't let this experience make you think bad of the hospital because everything else was wonderful and the nurses were wonderful and so caring!  They did take good care of me and "Becky" came back and apologized with tears streaming down her face.....and I believe she was only doing what she thought was right....she said she tried to get away from the other patient but he kept asking her stuff and she couldn't get away and didnt want to be mean.  I just didnt like the way one of the women....I cant remember if it was the head nurse or not...but the way she made excuses for Becky....because she didn't know the truth and there were 5 of us in the room that knew the truth and she kept saying stuff that was untrue...so she said "I'm only telling you what I was told"  Well, in my opinion she took the "excuses" as the truth but we knew better. That was the only thing that really upset me.  She should have came in and asked me and my husband or friends what happened first. Rather then come in and tell us what happened and why....cause we lived it and knew! I think my husband is more upset with more people!!  He thought that Becky was unprofessional and didn't handle the situation with the other patient properly; she should have know that he only wanted companionship and someone to talk to. She should have told him that she had a medical emergency and would be back.  He is upset with the hospital for understaffing.  He says there was only one nurse for many patients on night shift.  Then he is upset the head nurse for making excuses rather than just do what needed to be done.  She should have asked questions rather than tell us what she was told!  So all in all that night was horrible but the other nurse Anna and the orderlies were very sweet and helped me a lot.  My husband thinks they should have took my vitals more too...he told me they only checked my vitals once before the medical emergency which was 8 pm. So 5 hours went by before they checked.  With that much medication they should check...especially since my blood pressure runs so low on moraphine! 

So I know this sounds horrible but it was all because of ONE nurse and Im not making excuses and wont...but overall I was happy with the hospital.  Also, my surgeon had nothing to do with all of this!  He was wonderful!  It may also have been because I was considered an out patient...so I didnt have a permenant room in the hospital.  Even though they were nice enough to not put anyone else in my room with me so that my husband could stay overnight with me in the hospital.  We were so afraid that they would ask him to leave and they would have had to if someone else needed to share my room....so they made sure to not put anyone else in the room with me.  I think that was so helpful!

Well....on another good note...I haven't smoked a cigarette since Jan 6th.  Im trying to quit.  Today makes it 10 days!!!!!

So all in all....Im doing pretty good.  I feel so much better where my incision was and I feel very hopeful about my future and how things will go from here.

Carrie

 

A letter to all the wonderful people who I have come to know in one way or another...

 

The day is drawing closer for my surgery and I have been fighting with the reality of what is real with my situation.  I have always said out loud that "I have Chiari" and even said some time ago that I would have to get the surgery one day.  But when the day actually comes true and it's a for sure thing...the mind seems to go to a new level.  It's almost like waking up...I realized that I really do have Chiari...I really am having this surgery...and that my life changed the day I learned that I have Chiari.  Maybe some people can understand what Im saying but it can be confusing because it has been for me.  When I explain what Chiari is to people as Im trying to raise awareness, it's almost as if it's programmed in me to recite my research out loud but I never really had the reality of it hit me as much as it has in the last week.  I know this surgery is important and I believe that I have to have faith that it will make me better.  I have to have hope that my symptoms will improve and have courage that I am doing the right thing no matter what.

It's not been so easy but lately I have received so much love and support from people all over the world!  People who are members of this site, my myspace family, my co-workers, my email friends, and complete strangers who know somebody who knows me....it's overwhelming and I am so thankful and even more so...I have so much more faith in the greatness of the people in this world.  There are wonderful people in this world...it's not all bad out there.  We see so much crime, selfishness, and violence...we deal with the angry drivers, the impatient people in lines, and we hear the cursing of the people eating dinner at the next table in a restaurant...but believe me when I tell you that there are so many more wonderful people out there...and these people have bads days...they get angry, they curse, they frown...but in their hearts...they have a huge amount of compassion and love.  I guess I'm saying this because it's important to understand that we have to all give from our hearts and always offer support when we can...believe me...it's contagious.   I will always remember these times and always try to pay it forward by doing all I can to help anyone I can.  It only takes one person to make a difference and somehow it seems to get carried on...and on....and on.

Well, in 3 days I will be having my surgery and I am hopeful that it will all turn out okay.  If anything does happen bad then people will know that I was happy with my life...my family..my wonderfuly friends.  Thank you all who have given me such hope and have reminded me of how wonderful we can all be when we need to be.

I know you are wishing me well.....

Love,

Carrie

Well...if you have read my previous entries you will see that this was coming.  I knew it was a matter of time and a matter of finding the right neurosurgeon who knew about Chiari.  That is so important, to find someone who completely understands Chiari and the symptoms.  My appointment was on the 29th and the Dr. told me that my CSF was not present around my herniated tonsils and that I needed decompressed in order to get my CSF flowing better.  He cannot guarantee that I will be free of my symptoms but we are hopeful.  I know it's important to go into this with a positive outlook...so I am doing my best to think positive.  That doesn't mean that I am not scared to death!  I am very scared and I have been thinking about it for a long time and now that it's finally happening...well...I am terrified!  I know it's human nature to think of all the "what if's" and regardless of how hard I try, I still think about the risks and what can happen to me.  I don't want to die, have brain damage, become paralyzed....etc...and I guess the best thing to do is research the surgery.  I need to look at how many cases have had a good outcome and realize that there is a very very slim chance of death and all the other possible negative outcomes.  I think the main worry that is more possible is having a CSF leak.  The Dr. did say my Chiari was bad enough that he would need to cut open my dura and this increases the risk of a CSF leak.  I will just have to watch for symptoms and try to do everything the doctor tells me to do.  I know of so many people who have had the surgery and each case is different.  I will have to wait and see how mine turns out.  I was surprised that they scheduled me so soon....I think they would have gotten me in sooner but I asked to wait until after the holidays.  I don't want to be in so much pain around Christmas.

I think my children are a bit worried although they haven't said a whole lot.  I think they are trying to be hopeful that these gives them back their mommy!  I hope that it changes things enough so that I can be more involved in their lives as they are growing up so fast and I already feel that I am missing so much just because I have secluded myself a lot lately.  I have a very hard time being around a lot of noise and distractions.  This has gotten worse over the last 6 months and I am hopeful that once I have the surgery that I won't be so sensitive to noise.  I know my children are going to worry but I am bringing them along when I have it done because I couldn't do this without them and my husband.  They are my rock!  I believe my brother is also going to come for my surgery and stay here to help out for a few days. I am getting so much love and support from friends and family that I feel strong inside and I think that I can do this. 

Unfortunately I am in a very bad way with my finances and my husband has had trouble trying to get a job...seems everyone wants to hire after the first of the year.  So I am asking for donations but I do not want anyone to feel obligated or feel the need to feel bad if they cannot help.  There is many other ways to help and the number one thing is to just be there for me....send me a word of encouragement...a phone call...anything to keep my mind from worry.  I have a very big network of loving, kind, compasionate people from all over that keep my spirits up as best as can be.  I am very thankful for that.  I can't ask for much else...I am blessed there!

If anyone can help financially, I have a donation button on the bottom of my This N That page...it's safe and secure through paypal.  I would appreciate anything and I want to thank you in advance...I always try to help people in anyway I can and unfortunately I am now in the situation that I have to ask for help.

I think the surgery will help me understand the other side of Chiari better in the long run as I try to continue to run this website for support and info.  I just hope that I will have a good story to tell when it's all said and done...wish me luck!

Hugs..

Carrie

This week has been really challenging for me.  I have had constant heart palpitations and irregular heart beats.  My heart speeds up very rapidly and then will skip, or pause and the continues to beat in such a crazy way that I am left feeling exhausted and gasping for a breathe frequently.  I cannot sleep at night because I have trouble breathing and the heavy pounding beats wake me often.  I have been having these "episodes" for at least 3 years.  I do notice that they get more severe as the months go on.  It is always seemingly to be in a pattern.  It is a 3 week pattern where the first week I feel these irregularities off and on and by the second week it is constant.  I told a friend that I am experiences heart palpitations and she told me that she knew what I mean and that she has a few throughout the day.  I had to tell her that it was nothing like that at all.  Mine are not here and there.  It is a constant struggle all day long in the second week.  It starts whenever you wanna say the day starts...either in the middle of the night or morning and last 24 hours and continues.  I do believe there are moments that I do not notice it as much when I am moving about.  It is much worse or at least more noticable when I am still.  I am scared because the fear of my heart getting tired of working so hard and eventually just stopping because I know a heart can only work so hard before it is compromised.  I have been to my doctor in the past and had an echo which showed my heart was normal and I have had 2 24-hour holter monitors where the rapid heart rate and paused beats show up but the doctor had no reason for this to happen.  I even went to the ER in the past because just like today, I felt that I can barely stand another minute of it.  The doctor there told me everything looked normal and sent me home with a big fat bill!  I am so tired of this and would do just about anything to stop the feeling of my heart right now.  I am edgy and confused and my patience for everything around me is very limited.  I am willing to do whatever is necessary to rid this all together.  I don't think people who have not experienced this can even grasp an understanding.  They think I am just having flutters or occasional skipped beats but it is so far more severe and even painful at times.  I sit here and cry as I am writing this because I feel like I have no hope at the moment.  I don't feel like anyone can quite understand the pain I am going through and I don't know how much longer I can stand it.  I need help.  I just want to feel normal again.  I told my husband I would do anything to have one full week of feeling normal.  I don't know how things got so bad for me with my Chiari but I feel that it is progressing monthly if not daily.  I am tired and I am feeling so alone these days.  I think my family is becoming numb to the whole situation because they are so used to hearing me complain that it has become a normal thing to hear.  I don't know what to do anymore...if anyone has any suggestions please email me at carriebear31@msn.com.  I am desperate for help right now and I am not getting into see the new neuro until the 29th of this month.  I wrote to the Mayfield clinic asking what I can do and even emailed a doctor/neuro that I know from the event we hosted asking for any advice he could possibly give me.  I know this episode will pass but I also know it will then again return as it always does.  I am so sorry for sounding so down but I am down.  I have to vent about it and ask for help.  I like to be the one offering the help but I also know thats what we are all here for...to help one another....

Carrie

I have been very sick lately and equally depressed.  I have learned with trying to raise awareness there is so much involved on a personal level.  Peoples feelings get hurt...and I try to hard to make everyone understand...when I myself dont undertand.  Enough about that...

I have been sick lately.  More so lately than ever...pressure headaches, pressure when I stand up or sit down, neck pain, confusion, tiredness, back pain, and pains all over my body.  I don't know why because when I went to my neuro, he didnt offer any info to me.  He never does.  It makes me feel that it's in my head and when I try to beat it, cause if its in my head I should be able to beat it right?, I just get knocked back down.  I am so angry at Chiari right now.  I am so tired of letting my family down...I am just so very tired!  I have been crying off and on for days, not eating well, not sleeping well, except for yesterday I slept the entire day away!  I feel brittle.  I feel like a burden.  I feel like I am never going to get my life back.  I am tired of this and I hope that the awareness me and Merideth are trying so hard to get out there, makes a difference some how.  I hope that we all get to enjoy our lives soon.  I am so sorry that I can't be strong all the time...I try so hard.  I really do.  I so badly want all of us who suffer and have children who suffer, to be able to gain strength.  I want us all to be able to smile more often and know that there will be answers someday soon.

Keep spreading the awareness...something good will come of it someday....it has too!

I just wanted to say thank you to all of you who have read my article and sent me such great comments.  I am so overjoyed that the article has reached so many.  I am very happy with the way Kevin wrote the article and pleased with all the new people I have met through email and phone conversations since the article has been published.  Thank you!!

Do you know what Chiari really means?

It’s along the lines of a disease

It’s not like a virus or an infection

It won’t go away with any medication

 

Try reading more about my disorder

Try putting yourself in my shoes

Remember who I was before this all came about

Try to love me and realize this is not what I choose

 

I know you love me and want me to be well

It’s not my choice to live through this hell

I try hard to forget about my pain

I try to forget the feeling of going insane

 

Believe me when I say I’ve tried everything I can

Just love me and try to understand

I did not choose this disruption in my life

All I ever wanted was to be a good mom and wife

 

There will be good days and bad days too

Some days I will want to go places with you

Other days I just want to be left alone

Knowing my complaints are wearing to the bone

 

I know you love me and just want me to be well

I know you are trying to understand, I can tell

If you want to help me, lend me an ear

Help me by making people more aware

 

Chiari is a malformation within my head

With or without surgery it may not mend

Everyone with Chiari is as different as the next

One thing we are all doing; is doing our best!

 

 

Written by Carrie Marenberg

2007

Finally, September is here!  This is Chiari Awareness Month in Ohio (and in Michigan). There has been so much progression in the awareness of Chiari.  I am so proud and excited to be part of such a large group of people who share the same goals.  I am looking forward to the event Merideth and I have planned for September 29th in Ohio.  I hope to learn a lot from this year, being the first year, and start our awareness campaign off to a wonderful start!  I am so excited to know that I will meet and learn from other Chiarians from all around.

I have met some wonderful people along my journey which have given me strength and knowledge.  I know that without these people in my life, my mission to raise awareness would be very difficult.  I have also come to the conclusion that my time has come to seriously think about having the decompression surgery.  My quality of life is being compromised and I don't want to lose anymore of it.  I think sometimes that I underestimate my Chiari.  I always think that mine is not as bad as somebody elses therefore I don't need the surgery.  This is not true.  We are all so different in our Chiari battle.  We have to determine for ourselves when the time is right to take back our lives.  I also realize that even having the surgery, it will take time to heal and notice the changes.  I have gotten worse over the last year with a few months where I thought I was going to be okay.  This is what confused me so much.  I thought that I was getting better on my own and that I didn't need surgery.  My symptoms of pain, heart palpitations, confusion, brain fog, tingling of my fingertips, and horrible head pressure has been enough to make me realize that although I may have good days (which seem to be less and less) I still have Chiari.  Having Chiari won't change regardless of my feeling of being okay sometimes.  I cannot allow my body to go through changes that may be irreversable.  I have learned so much about nerve damage and syrinx and it's so important to be proactive in this disorder if we can.  I worry about the expenses and how it effects my job and my childrens lives. After talking with people, I realize that all these things will work themselves out.  I am going to speak with a neurosurgeon about my future and start making changes that will benefit my quality of life. It's time.

 

On Saturday, August 18th I woke up with the worst head pressure I could ever imagine.  I tried to relax to rid the pain and I tried my medication but nothing worked.  I started to feel nausiated and began throwing up.  Normally I would not ask to be taken to the ER but I could not handle the pain.  I can remember telling my husband that it wasn't a headache and that it was my brain swelling!  I guess I was pretty out of it and pain can cause so many emotions.  I know I tried not to cry because it only hurt worse but I did cry.  It was probally one of my most weakest moments with my Chiari.  I do know that it was Chiari related just based on other times I had pressure and what I was told by my doctors.  I would get the same exact pain from yelling at a baseball game, singing loudly, talking loud or too long, and or straining.  The doctor said it was increase of intracranial pressure.  The only difference that day was that no matter what I did; I could not ease the pressure. 

Upon arriving at the hospital I was put in a room with the lights out.  The people there were so nice and tried to make me as comfortable as possible.  I continued to throw up and cry from the pain.  The nurse hooked an IV up to me and gave me Duladon (forgive me if that is incorrectely spelled, I was not in my normal mind), and phenegren.  Then they gave me a CAT Scan.  I know I was there longer than it seemed but being medicated I slept most of the time I was there.  The reason for the CAT Scan, I was told, was because of my Chiari condition.  I was very surprised when the results came back saying that there was no swelling, no mass, and nothing they could see that would cause the pain.  They released me soon after that and sent me home and told me to follow up with my family doctor.

I was told by some people within my support groups that they have been told that you cannot always see things on a CAT Scan when it involves Chiari.  I do not know what exactly caused my pain but I hope that when I go to get my MRI's done (6 month follow-up) the neuro can explain things better to me.  I will be having those done on Sept 25th.  I will post once I know more. 

My goal lately has been to raise awareness about Chiari as much as possible.  I was getting a little down and then all of a sudden I received an email from Governor Stricklands office saying that September will be designated as Chiari Awareness Month!!!!  That put me back on the saddle, so to speak, again.  I was so excited that all the emails sent to his office finally paid off.  I know there were a lot of people that sent letters to his office! (Thank you, Thank you, Thank you).  I would love to be a part of hosting an event in September to raise awareness.  I have sent out so many emails to different people all over Ohio to request some help but I am still awaiting replies.  Even if I cannot be a part of holding an event I will still continue to raise awareness every possible way I can.  I have a few people who are going to be getting back with me for either interviews for newspapers or just getting information to put on their websites or general newsletters.   That is a great start!

About how I have felt lately; this weekend has been very hard.  I normally limit myself to what I do on the weekends so that I can take that time to relax so that I can deal with the next week of work.  I am a little baffled as to why my body hurts so bad and why I am having pressure headaches (aggravated my strain or activities).  I went to the derby on Friday at our local fair and after being there for about 2 hours I was ready to leave because of my head and neck pain.  I didn't even walk around much so I am not sure what brought it on.  The only thing I can think of was the noise level.  So on Saturday when I woke up, I was barely able to move without pain.  I had to take my daughters school shopping so after spending a few hours trying to get my body ready for the day, we went shopping.  I continued to feel neck and head pain during our entire time shopping.  I had to cut in short after my legs felt so weak but my girls understood.  It is Sunday morning and I promised we would finish our shopping today.  I still have pressure in my backside of my head and neck pain but also today I feel like my spine is stiff and limited to movement.  I have heard people talk about a condition called Tethered Cord and sometimes I feel like how people have described it.  I am anxious to talk to my neurosurgeon about it and ask his opinion.

I have to do something to try to pull myself together today because I really need to get some things done.  School starts very soon and I don't want the kids to be unprepared.  I just wish that I could do things without always feeling horrible the next day.  I think that has been the worst for me because at the time that I am doing something, my pain is not as bad but when i wake up the next day I sometimes feel like I have been ran over by a Mac truck. 

Anyways...I am going to continue my mission to raise awareness and continue to find ways to deal with life as it comes.  I am very excited about getting the public educated and hope that I can at least help one person find out the reasons for their pains and symptoms.  It does make things easier to deal with when you know WHAT your dealing with.

Until next time.....

Maybe I am letting my pain get to me more because I am sad by the mean comments on my site, although it won't take long for me to get over it since I know that some people in the world just can't stand to spread happiness and would rather be hateful...whatever.

Anyways, me and my husband went out last night and had a really fun night....I'm paying for it this morning.  I have had a few bony places that stick out in the back of my neck and normally that is where most my pain is.  This morning it feels like I am an alien and the bone feels like it is going the wrong direction, instead of up and down, it feels like it is horizonal.    I have a bad headache (no, I didnt drink last night at all), and my neck hurts regardless of what I do.  I have a lot to do today so I feel anxiety knowing that I may not be able to get it all done.  Still, I would not have given up my night with my husband...we needed the time together and we had a blast!  It's just too bad that I always have to hurt after doing something..it would be nice to be able to do something without waking up with Chiari wrapped around me. 

Okay, time to get over it right?  I got things to do and somehow I will dig deep down (into my medicine bottle too) and find the energy to do things that need done...even if I have to take a lot of breaks.  It's kinda funny, yesterday I was standing in the kitchen doing dishes and there was quite a bit.  Well, I had to take 3 breaks while doing them because my back, legs, and neck hurt too much.  But...it didn't get me out of doing them, darn it!  lol  Guess I need to let the kids hear me complain louder...hahaha....

Its been a few weeks since I last made a entry in my diary.  I have been trying to maintain a  positive attitude about my Chiari and not dwell on pain over the last few weeks.  I feel that I have done very well but I notice the more I focus on positive aspects of my life the less I even think about Chiari.  The reason for my change in my lifestyle was because I had put Chiari in the center of my life and everything I did was based on Chiari.  I could not live that way anymore and knew that if the Chiari had that much of a hold on me; everything else would suffer.  Maybe my new pain medication has a lot to do with me being able to think better and have less pain.  Regardless, I feel that I have turned a corner in my life and I am on the road to a better life. 

Still, I try hard to maintain my site and my Chiari relationships in my life because I know that both have been my strength in my batttle.  I know that without the support and the understanding my battle would have been longer and harder.  My hope is that I can continue to live more and more each day as I did before I knew I had Chiari.  I accept that I will have pain and I will be limited to what I can do.  I accept the fact that I need to still monitor my progression as it occurs because nerve damage is not reversible.  I need to make an appointment with my neurosurgeon for my follow-up MRI because it has been 6 months since my last one and it has been 6 months since I first discovered that I have Chiari.  Its amazing what I have learned and discovered in just 6 months.  Whats even more amazing to me is the strength in the new relationships I have made in just 6 months.  I feel very close to many of the people who I talk and email to that have Chiari in their lives.  It has made me a better person to listen and understand their pains and challenges.  There are so many people that do not give up and let their condition take over their lives and even when they feel it may start; they reach out and pull theirselves back together.  It's so amazing to me how strong people can be when faced with life changing situations.  I know my journey has restored my faith in people and in myself.  There was a time before I knew about my Chiari and in the early months where I pulled away from people and just wanted to be left alone. This of course was before I knew what was wrong with me.  It's so hard to function when you know something is wrong but the doctors can't find a cause for all of your symptoms.  Since finding out, my life has changed so much and I now know which direction to go in. 

 So with all that being said, this has been my 6 month marker and this is where I am at.  I don't set high expectations of myself with dealing with everything but I do set high goals as to how I will live my life.  I am the person that I choose to be...even though I cannot always choose my outcomes... I can choose how I deal with them.

Although, I have to admit that I have been feeling better, I have also had an increase of symptoms with ringing in my right ear and my fingertips get a tingling feeling.  It's almost as if the tips are trying to fall asleep.  Both these symptoms have gotten more frequent.  In the last week, my fingers had that feeling about 3 different times.  In the past, it was just a few times here and there.  The ringing in the ears and the feeling of losing hearing (not totally) has been occuring about 8-10 times a week.  Sometimes that lasts up to 2 mins or so.  It used to just come and go also.  I don't know if it means anything but I just wanted to list my symptoms as they occur or when they seem to get worse.  As far as the pain in my neck, it hasn't been as bad for me lately unless I hold it in one position for too long.  Of course I am on Opana which is suppose to be a very strong pain killer.  I take two a day and it slowly releases the meds throughout the day.  I do not feel as depressed lately and I feel that I might be getting a good grip on my chiari.  Hopefully I am not jumping the gun because lately I have been trying hard to find as many positives in my life as I can.  I have heard that positive thinking can make things better...even pain. 

My heart goes out to all of you who suffer everyday and feel like your at the end of your rope.  I cannot tell you that your situation is going to get better as far as how you feel physically.  I can just tell you that you have to do everything in your power to take control of as much as possible.  It's easier said than done, I know.  The support groups on the Yahoo Groups are great for comfort and I hope that my website is comforting and helpful.  I try to find something that I am thankful for everyday and take baby steps to getting things done.  I could not have gotten this far without the support and love from other Chiarians and family. 

xxxooo

It was actually amazing that as soon as I arrived at the Clinic and payed my copay, the doctor came out right away and started his consultation with me.   The doctors office looked like "good ol' OLD medicine".  It was really amazing to have a doctor do everything himself incuding checking my blood pressure.  He had a table with a bunch of different gadgets that he used to check my senses and such.  I passed it with flying colors.  He then went over my slides with me and told me that he wanted me to try to use biofeedback as a method to rid my pain.  Here is a link to biofeedback:  http://www.umm.edu/altmed/articles/biofeedback-000349.htm

I am learning about this right now too.  I don't know much about it.  If there is anyone who has tried this please let me know how it worked out for you. 

So, I left there a little confused but I am going to try it. When I get back home I am calling my family doctor or my neurosurgeon to find out where I can find a place that does this.  So for now the good doctor says I should wait before I have a very serious brain surgery and try everything else first.  I agree with that because I have never wanted to have the surgery done.  I just wanted to have my life back.  The doc says we can revisit the Chiari again later once we see if the symptoms I have are caused by muscle tension.  I need to see if the biofeedback helps any of these symptoms and then I can start working on the symptoms that are left.

So that is where I am with my Chiari.

It use to be that when I woke up I would experience the worse part of my pain.  Since having the facet injections and radio frequency procedure and now being on the Opana, I noticed my pattern of pain has changed.  I do not really think the procedures helped very much but maybe they helped more than I think.  Lately I have noticed that my pain tends to get worse as the day goes on.  I cannot hold my head in one postition for very long without it feeling like it is "locking up".  There are many days were I feel like my head is too heavy for my neck to hold up.  The past few days I have had a lot of head "pressure".  This happens when I bend over or move my head too quickly.  Even when I sing or talk very loud it happens.  I also notice lately that when I look at something I notice black lines or specs but when I narrow in on it, it is not really there.  I definately noticed too that my hearing is not the best and that my concentration is out the window! 

I am going on a trip to Cleveland where I lived as a child and I am seeing some old friend that I have not seen since I was 11 or 12.  I am very nervous because I have such a difficult time with speaking clearly and my nerves sometimes get the better of me but I am not going to back out because of this.  I am very excited to see my friends and I will explain my disorder to them so that they can understand why I am the way I am.  Sometimes I feel like I exaggerate my symptoms when it comes to having a conversation with someone or simply trying to think but when I am in the situation I know that I am not exaggerating.  I think a lot of it is just my nerves.  The main reason for this trip is to go to the Cleveland Clinic to get their opinion on my situation with Chiari.  There are not a lot of knowledgable people in my area in the medical field.  Luckily I am from Cleveland and I can make me trip into a little mini vacation.

So today was not the best of days because I had a lot of pain and confusion but the day is almost over and I have my little mini vacation to look forward to.

What I am thankful for today:

I am so thankful for my new friends that I have met along my journey with Chiari.  Everyone has stuck together for the most part and wants to be supportive in every way possible.

~Carrie

 

I have decide to keep an online journal as much as possible with time permitting.  I want to include my life with Chiari but also ways that I deal with it which is sometimes good and sometimes not so great.  I plan to write a book but I am unsure of the content.  I want to include my life with Chiari but I also have had so many other obstacles in my life;  I would like to include those as well. 

Having Chiari is not the only obstacle in my life.  When I watch a TV show like Oprah or one of those talk shows, it seems like regardless of what they are talking about I can always say, "hey that happened to me".  The great thing out of all of this is that I have learned some great coping skills and tools to help me get through everyday.  I have learned to turn most of the negatives in my life to positives.  I can't say that I always overcome everything as best as possible but I can say that I never give up completely and I am always trying to find a way to "get over it".  One of the most important things to do for me is to remove as many of the obstacles in my life that I CAN remove and then start tackling all those others that I need to accept or fit into my life in a more positive way.

As a Chiarian I know that I can't always do what I want.  I also know that people who are not educated about Chiari may not always understand why I do or don't do certain things.  I have accepted that but I am still on a quest to enlighten as many people as I can about it.  People who are in my daily life are probally getting tired of hearing about it (I know my kids are for sure).  Just like I have to learn to live with it, so do they.  It's no different than living with a person with aids, cancer, or even alcoholism.  People have to get educated so they know how to deal with people with those problems.  The ones in my life that truly love me will try.  I can't expect them to swallow it all in a short period of time but over time they will understand more.  It isn't easy for me to wake up not knowing what my day will be like or knowing that when the kids want to go to an amusement park that I can't have fun with them.  It's not fun turning invitations down because I'm tired, in pain, or because I can't do what they are doing.  My life has altered as well as my relationships.  I am blessed that my husband has been 100% supportive in all of this and has took every step along the way with me.  He understands my limits and feels my pain.  I can only hope that everyone has someone in their life like that. 

As of today, I am still lost in my search for answers about my particular situation.  My symptoms come and go and I still cannot pinpoint which symptoms are chiari related or not.  I have had so many tests for several symptoms without an answer and those I contribute to the Chiari.  Until the doctors come up with another answer I will contribute any symptom from the Chiari symptom list to my Chiari.  That saves my brain time with trying to figure out what is wrong with me all the time.  I spent too many years wondering what is wrong with me. 

I am thankful for my good days.

~Carrie

June 30, 2007

 

 

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